different roads to success

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{image is a photo of Brooke standing on Luau’s shoulders on the beach in Newport, RI. She looks as though she is flying. Photo courtesy of Connerton Photography’s magic lens. All rights reserved.}

During the talk, Dr Draper asked a ten year-old girl to come to the stage. She asked her her name. The girl said her name was Alex. She asked her to get up and walk around in a circle. She did. She asked her to do some simple addition. She did.

“Clearly,” Dr Draper said to the crowd, “Alex is very bright.”

And then she whispered some instructions to Alex. She told her that she was now unable to move on her own or speak. She folded her arms and her legs in front of her, as Melody’s would have been.

She asked her her name. Alex smiled up at her in response. Dr Draper looked at the crowd and said, “Oh, isn’t that sad? She doesn’t even know her name.” She asked her to walk in a circle. She didn’t. She asked her some simple addition questions. Alex made the same noise each time. The audience giggled.

And Dr Draper said, “Nothing has changed except Alex’s ability to tell us what she knows. But now, she has gone from being a bright kid to someone we laugh at and whom we feel safe to assume knows nothing.”

It was an extremely powerful moment.

From Listening, October, 2013

I’ve been struggling with what I’m about to say for a while now. I know what I want to say, but I really don’t know how to say it. Or, better said, I don’t know how to say it in a way that I could have heard it when we were beginning this journey.

You see, when we started on this road, all I wanted – all I could imagine wanting – was for my daughter to be able to use words functionally. I yearned for her to tell us what she needed and wanted. I dreamt of her telling us what she felt and feared and loved and hated and hoped for and what SHE dreamt of.

I could imagine no other way of her doing that than by talking to us. Because that was all I knew.

Eight years later, Brooke is held up as a success story because she is, at eleven, talking .. and talking and talking and talking. Her speech, while still predominantly scripted, is ever more novel, ever more creative, and ever more functional outside the sphere of those who know her well enough to connect the dots.

Able to better express her needs, she is less anxious trying new things. It makes sense. If you know you have the ability to be understood when you say, as she did at a fundraiser this weekend, “I need to go outside of here. It’s too overwhelming,” then you’re far more willing to give it a shot.

So yes, Brooke is absolutely a(n ongoing) success story.

I understand completely when parents new to this road say that she offers them inspiration and hope. She should. She has defied expectation at every step. She has shattered every, “won’t,” and “can’t,” and, “we just don’t see these kids … ,” that we encountered along the way. She has taken the air out of nearly every negative and limiting stereotype we’ve heard.

So great, let her inspire you as you refuse to allow your own kids to be boxed in by those whose limited imaginations prevent them from seeing what’s really possible.

But I need to say a few things. A few qualifiers, as it were.

Firstly, Brooke is no less autistic than she was before the words came. She is no less autistic now then she was when she was chasing cobwebs in the corners and I was chasing my tail, not knowing how to help her. She is no less autistic than she was when she was first diagnosed.

And that’s okay. It’s even more than okay because there are parts of autism that are pretty amazing for her. Her singular and abiding love for the things that make her happy. Her unmitigated and uninhibited joy. Her unabashed ownership of her own space, hers to fill with laughter and life, no permission needed. Her view of the world as it truly is – raw, unvarnished, authentic. Her ability to make us all see it that way too.

The hard stuff remains — the stuff that I feel less and less comfortable talking about as she gets older. She is autistic. There will always be hard stuff. And yet, still just as autistic as she was before, her life looks – and, in many ways, is –  entirely different now than it was so many years ago.

She can ask for help.

She can say, “I’m scared.”

She can say, “I need to leave.”

She can say, “I don’t understand.”

She still struggles mightily. She still, and may always, need a lot of support. And yet, she is happy more often than she’s not. She likes herself. She likes being autistic. The two are not separable. She is autistic. She is herself. She likes herself, therefore she likes being autistic. It’s a pretty simple equation.

That last paragraph? That’s the success. Not the fact that she’s gotten there by communicating verbally. The fact that she is happy.

Being able to communicate effectively and reliably changes everything. But that doesn’t necessarily mean talking.

And this is the part where I know that I need to tread really carefully, because I know, I know how hard it would have been, how angry and indignant I would likely have become, had someone told me eight years ago that Brooke might never speak to communicate and then had the audacity to follow that up with an insistently hopeful, “But that’s okay because it might not be her road to success.”

And I get that I’m probably also not the best one to deliver this message because, well, I talk and my kid talks so what the hell do I know? And I get that. But I’m saying it because I worry that a lot of new parents out there are so convinced that Brooke’s is the only path to communication that they’re missing opportunities to help their own kids find theirs, whatever it might be.

My friend Barb is non speaking. She has written two books, blogs, and has just started, of all things, a radio show.

My friend Amy is non speaking. She is a beautiful writer and a respected and renowned activist / advocate and world changer. Among myriad other positions, Amy sits is on the boards of the Autistic Self Advocacy Network and the Florida Alliance for Assistive Services and Technology

I hate to go here because, cliché, but, well, this guy doesn’t speak either and I think it’s pretty fair to say that he’s made an impact on the world.

What they all have in common is the ability to express themselves in ways other than verbally.

It’s not always easy to find the method that will work for each individual. Sometimes it appears to be impossible. Or we find something that works but it’s infuriatingly limited. “I want …” with a list of one’s most commonly consumed foods is a great place to start, but it’s not going to mitigate the frustration that comes from not being able to reliably convey everything else. Including, “the food I really want isn’t even on this list.”

It’s heartbreaking. And the more I see and the more people I spend time with who struggle with severe communication challenges, the more I believe that not being understood is one of the most pressing root causes of what we stubbornly call “maladaptive behaviors.” (Physical pain, sensory overwhelm and emotional dysregulation being others on Billboard’s Top Ten.)

When we can’t make ourselves understood, we become frustrated. When we become frustrated, we “act up.” We may become aggressive. We may scream. We may hurt ourselves or others. When we then get reprimanded (or, as is often the strategy in behavioral therapy, purposefully ignored) in response to our frustration, the cycle escalates and can ultimately becomes unbearable.

Every human being deserves a way to communicate. And I believe – truly, down to my toes believe, that everyone, and I mean EVERYONE, can. I also firmly believe that there are both high and low tech solutions yet to be imagined that will change the game completely for many of the folks who have yet to find a method that works for them. The potential is limitless, but we’ve got to prioritize the search. Now.

If I were Queen of the World, I’d be yanking MITs graduating class out of Silicon Valley and shoving em into tech labs, then incubating the crap out of AAC start-ups. What haven’t we thought of yet? It’s tantalizingly close. And we have to find it.

Because our autistic friends and loved ones, whether or not they have words, have thoughts and feelings and opinions and hopes and fears and likes and dislikes. Because they have nightmares and dreams. Because they deserve a means by which to share them. And because we are all better for it when they can.

Because being able to ask for help, to convey, “I’m scared,” to ask to leave, to say, by whatever method you might “say” it, “I don’t understand,” changes everything. Because to be understood, to be heard, to have choices in life, a say in your destiny, a voice in your own advocacy … is everything.

Talking is one means of communication, but it’s by no means the best.

And it sure as hell ain’t the only path to success.

 

 

28 thoughts on “different roads to success

  1. you have a amazing quality of keep writing…i was shocked to see the consistency of your writing. you are continuously writing 15 post averagely in a month from past 5 years. this is really amazing. by seeing this all i come to know the power of keep posting the good stuff on wordpress. if we want to be popular we have write good stuff all the time rest automatically happen.

    keep writing, you are a big inspiration for those who fed up early in writing.

    regards, god bless.

  2. When I saw your daughter and your email correspondence it helped me. My son began sending emails to his grandparents overseas. His typing has taken off as has some many things. We don’t even have to learn to type like we used to but there is still talk of teaching “tough typing”…..
    We need to learn to embrace the technology to help…to educate within the school system( writing is tough for him so why push it when we really don’t need it much).
    His progress to is amazing and it down to hard work, early intervention by a wonderful group of people. We have had our share of those who do not care, who see conditions not children with potential.
    There is a wonderful youtube video called ‘ the case against assistive technology’……it would be good if it was required viewing by all working with children and adults who need a little help…
    Thank you for sharing your journey……

  3. I luuurve this (I’m also desperately trying to get back into the rhythm of blog things after like…now having a life again). The only thing I can think to add right now:

    Don’t ever let the fact that your kid is verbal be an excuse for assuming that, if they needed to say “I need help,” or “This is too much” they could/would. Jess, you guys have done such a wonderful job of making sure that Brooke knows that she, not anybody else, is the best judge of whether or not an experience or interaction is comfortable or safe for her. But for many autistic people, that simply is not the case. Especially for kids who have been taught that their industriousness and worth as a person (or student) is determined by how un-autistic they can make themselves seem. Especially for kids who have gone for a long time without a diagnosis.

    So many of the verbal autistic young adults (and non-verbal young adults, as well) I know are currently engaged in the (probably life-long) process of re-learning that their experiences and reactions are valid in the first place, let alone important enough to merit communicating to other people. Just the fact that, at such a young age, Brooke is communicating her needs to others at all is a testament to the incredible job you guys have done as parents.

    I’ll let you know when I learn the skill of “telling other people when something isn’t working for me”; suffice it to say, I haven’t figured it out yet. At all.

    • This is so true. Sooo many parents of non-verbal or non-speaking kids, especially if I’m asking them to have hope for those kids’ futures or ambitions, will tell me “But YOU can speak–you can tell people what you need, what you want, how you feel…”

      And that’s not really how it works at all. Speech is of limited utility when you can’t get anyone to understand a word you say, or the world has been made unsafe for you to communicate, or the core communication issue is something other than being able to carry out the mechanics of speech.

  4. Very true.If there is anything my sons autism is teaching me is to accept what methods of socializing and communicating are comfortable and possible for him.I still at times get stuck on my expectations of him,expectations that are not unrealistic,but that are not necessary,because he himself will determine how he interacts with the world around him and what makes him happy and content.
    However-I hope the world around him can be accepting of him as he chooses to be.That is the part I worry about as a parent.The onus is on society.
    That is why awareness, and sharing experiences such as Brooke’s and your families is so important.

  5. Yes to AAC because my kid is in pain right now and she can’t say where it is. She is just crying and crying… Have to go to Dr’s office to figure out what is bothering her

      • We did. We went for the Dr visit and found nothing first. Then we were at another place for a therapy, and I looked at her fingers for some reason and saw one of them was inflamed on the corner. The reason why I could not see it right away because my kid was sucking it. Oh, well…

  6. Thanks for the powerful words as always, Jess. This is only tangentially related, but when did you know it was time to stop ABA? They certainly won’t tell you your kid doesn’t need it anymore, but there comes a time when the prohibitive expense of 4 or 5 co-pays per week makes you wonder how good these people really are anyway,and how much your kid is getting out of it. I’m not interested in doing token-earning stuff with him but I feel like I could do some of the crux of the work myself at this point (practicing following multi-step directions, putting stories in order, writing letters etc) and that he doesn’t necessarily need the token/table-training aspect anymore. (I hope! All I know is that he sat down [intermittently] with me last night and did two pages of Kindergarten homework (number writing) with no complaints.) I know you have mixed feelings about ABA, but I’m assuming you weaned her off it at some point and would love to hear other people’s thoughts on that transition. If you have an old article about this subject, I’d love a link to it. Couldn’t find one in the archives. Thank you!

    • June, For me, it’s far messier than reaching a point where [any kind of therapy] isn’t “necessary” anymore. Our kids’ needs change over time, just as all of ours do. So they may not, in a particular moment, benefit from certain aspects of a given therapy while some parts of its methodology may still be very useful for them. We never “weaned her off” of ABA, but we absolutely stopped using it as the only approach to teaching her. We still use the ABC (tracking antecedent – behavior – consequence) method to try to gain insight into what her behavior is telling us when we can’t figure it out. We still break down tasks for her into small sequential steps (or chains, if you must) in order to make them more manageable for her. So there are still aspects of ABA upon which we rely, even while rejecting its overarching principles and strategies. We also use aspects of Floortime and RDI and just about everything else out there. I am a firm believer that no one therapy used exclusively and in its purest form can really work for anyone, no less everyone. If you enter “ABA” (no quotes) into the blog’s search, you’ll find lots of posts on the topic. I hope that helps.

      • Thank you, Jess! I just meant the use of outside providers. Being consistent and breaking things down is absolutely a fantastic take-away from the work they’ve done with him. I think I’ve also become a much better parent to him (partly directly due to your writing and those you’ve pointed me to) since we started the ABA work, and will be able to provide something closer to the calm and consistency that has helped his focus.

  7. Thank you for this. I have triplets who are autistic, two girls and a boy. My daughters did not start speaking until age 5 (and their language is so similar to your daughters it makes me smile) and my son–he has the words, they just fly out of his fingertips. What is my joy? That at age 9, they are all starting to communicate their desires, be it by scripting or typing or with picture boards. Because although my girls have spoke for four years, they are just now able to express their wants and needs.

    • yes – SO important to remember this – that speaking doesn’t mean having the ability to communicate. See Emma’s comment too. Yes, yes, yes.

  8. Jess – thank you for your words today. This whole idea of self-advocacy is becoming clearer & clearer in part due to the thoughts that your words inspire in me!

    My son is verbal, but that doesn’t mean that he communicates well. In the heat of a difficult moment, he doesn’t. He resorts to aggression, a leftover impulse from the early years when there were no words. My husband and I began utilizing a conversation approach outlined by Dr. Ross Greene in his book The Explosive Child (if anyone wants more info, message me). Dr. Greene also has a non-profit called http://www.livesinthebalance.org, and has a ‘Bill of Rights for Behaviorally Challenging Children.’ The last bullet in this document reads as follows:

    “To have adults understand that blind obedience to authority is dangerous, and that life in the real world requires expressing one’s concerns, listening to the concerns of others, and working toward mutually satisfactory solutions.”

    My work with my son’s self-advocacy began with this statement. Once adults realize that they, too can participate in listening and working together, things change. Slowly, but the change is coming. My son isn’t always able to say, “I’m getting overwhelmed,” but he, and we, are learning. Sometimes, we have to be proactive so that we don’t have to be reactive.

    Thanks so much,
    Stella

    • “To have adults understand that blind obedience to authority is dangerous, and that life in the real world requires expressing one’s concerns, listening to the concerns of others, and working toward mutually satisfactory solutions.”

      I love that. Thank you.

      • There is a lesson for all in this statement. There are too many people who accept that because someone is in a position of authority, a “professional” that they have to be right. Bullies are not just in the playground…..

      • Thank you for sharing the link. Very informative and true…. Sheer frustration can be at the heart of some many challenging behaviours. I wonder how others would react if they were faced with the same challenges as not being able to communicate, do things others take for granted… The best carers including professionals are the ones able to put themselves in the child/adult’s shoes……..

  9. It’s amazing you wrote this today. Last night my son asked “Mommy – what would happen if someone couldn’t speak?”. Your blog was first to pop into my mind, and how often you’ve touched upon this subject. It led to a great discussion about how some people don’t speak, but how that doesn’t mean they don’t have anything to say. We talked about various forms of communication – from sign language, to body language, to the use of computers. I used examples of students in my school who are non-verbal, but how Mommy “listens” to them in other ways. He even asked to meet one of the students I mentioned because he wanted to learn sign language. We will continue to have this discussion over and over in hopes that he will understand that there are so many forms of communication, so he can find ways to communicate with anyone he may meet who is non-verbal. Thanks for all you do, Jess (and Barb, and Amy, and Stephen).

  10. Please don’t forget the importance of offering other means of communication even when someone DOES speak. My ability to communicate complex emotions and experiences and needs in typing is drastically better than my ability to communicate verbally. I can lecture something fierce, but if I’m in the grocery store, trying to find MY crackers, there is no chance whatsoever that I’ll turn to my mom and say, “I’m sorry, Mom, I’m overstimulated and that’s making it really hard to visually process the many crackers boxes to find the ones I want.” Stimmy hands, frustrated growls, strings of “I… it… UGH!… Mom!” aren’t very helpful, but they’re all I’ve got. Chloe is good at getting her phone and saying that she’ll text it to you. I don’t do that so much in the moment (I should!), but when something big is bothering me or making me happy or anything at all, I often email. I also write letters for big medical appointments before I go in and hand my iPad to the doctor. I have words, and sometimes entirely too many words about subjects that are entirely too obscure (I’m sure my doctor didn’t really need to know about the sad history of the quagga yesterday)… but, as I’m sure you know from experience, sometimes having those words makes it hard for people to believe and harder yet for them to figure out that I don’t always have actual communication available when I need it.

    • “…Offer other means of communication even when someone does speak.” Yes, Lydia! Thank you for simplifying it to that degree!

      This is an important reminder! Thank you.

  11. I am all for getting the best minds in the world on a way for ALL to communicate. The most frustrating, heartbreaking, absolutely awful thing is watching your child in pain with no way to no what is causing that pain or how to help! There’s no other way to put it. As I told my beautiful, wonderful non-verbal 20 year old yesterday.. Nothing in this world matters more to me than his happiness! When he is happy.. the world is a beautiful place. That smile, laughter is beyond infectious!

  12. I read the first part and began thinking, “But not everyone may ultimately use speech.” and then Boom! There you went. 🙂
    This is terrific. My daughter will benefit from messages like this. Thank you for saying it!

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